beginning again

To my seven readers:

This is mostly a letter to myself. Please be patient.

I realize that my blog is on the cusp of being defunct. And that is not what I want. This blog started, in earnest, with Benjamin’s birth. When I had Benjamin, it was like someone smashed me in the back of the neck with some bricks. Ben, I am sorry, but that is what it was like. I love you so much I can feel it in my skin; the feeling is something physical that I carry with me. But you were an exhausting, relentlessly screaming infant. And I struggled to find a way to be a mother in my own way, never having really had one myself, and not identifying with those mothers I saw around me, and that was hard. And I wasn’t writing anymore—I was barely combing my hair—so I started this blog as an outlet. Yes, it serves the purpose of updating people and posting photos, but mostly, it is an outlet. When my little Elliott was born, Benjamin was in the midst of many developmental delays, and we were worried. And then as Ben started getting better, Elliott started getting worse, until, finally, he was diagnosed with autism. I have been through many experiences in my life, but that time navigating Ben’s remaining delays and learning to accept Elliott’s emerging ones…that time was a thick fog. It was hard. I gained weight, I got depressed, I viewed things very narrowly. I felt lonely and venomous and uncertain of myself during that time. Some of that is reflected here on this blog. The worst moments were not articulated.

Things are still hard sometimes, and I still worry, but I have come to terms with a lot of things, especially in regard to Elliott. He is starting a general education kindergarten in the fall, which I am nervous about, but, for once, I also see the possibility of him doing okay—which I can’t exactly define—of him having friends (he already has his first one) and being happy. Benjamin is his own little man, the top reader in his class, learning to play piano, a Cub Scout. He has his quirks, and his anxieties. He is unusual, like his mommy and his daddy, but that is to be expected. I feel so fortunate to have these boys who surprise me daily. I know that things can be worse, always, and I am finally beginning to exhale. My friend Michelle says that giving birth splits our bodies open, literally and figuratively, changing us fundamentally. I am beginning to look back at myself and see what I am left with. One thing I am realizing is that I care deeply about writing, and I miss it. This has been thrumming in the background for a while now, and I have been ignoring it.

I have decided to begin writing regularly again, and to start small. I will write at least one entry per week here. It might be about parenting, or it might be about something entirely different. Music, politics, books. Maybe I will post something more creative, something I am working out. In addition to this, a friend has given me some weekly time to write at the PermaDirty artists’ co-op in Claremont. It’s only two hours a week, and this is the third week I’ve been working here. Each week, I walk in exhausted, distracted, resistant. There’s a very small Swedish guy who is always there at the same time I am, mixing music on his laptop. He seems more “artisty” than I will ever be, but I sit down anyway and I type. Two hours later, I exit elated, even last week when most of my writing felt forced and clunky. No internet, no phone. Just writing. I’m working on old projects and new ones, picking my way through the words, slowly.

I was cutting Benjamin’s fingernails yesterday, which I have been doing at least weekly since the day he was born, so it has been seven years. (!) So much of life seems to be upkeep—laundry folding, gas pumping, tooth brushing—and that can be incredibly depressing. But it can also be incredibly reassuring, reaffirming even. Everything is happening outside, but here I am, sitting on the kitchen linoleum, cutting this kid’s fingernails while he chats about Mario and Yoshi and picks the cracker out of his braces with his free hand, the same thing that has happened again and again and again and again. His straw blonde hair is sticking straight up on his head and when I am done, he kisses me with his constantly wet lips and he tells me he loves me. He sits on my legs and relaxes into my body. His head smells like sweat. We begin again next week.

My new blog will be at http://angelacbartlett.wordpress.com

weight loss is boring

I lost 7 pounds in a month and have flatlined because I don't care anymore. And I like beer. But I'm still not eating grains or sugar (except for maybe once or twice a week), and I'm keeping my weight off. So, no dramatic before and after photos. Not for a while anyhow.

What this post is about is not weight loss, but about Elliott. Today, I watched some video of him from exactly a year ago. I could not understand anything he was saying. Everything began with a "k" sound and ended with a "k" sound. It was like he could not get his muscles in his mouth to work. He was trying to talk, you could tell he knew what he was saying, but I just couldn't understand it. And I'm his mom. Imagine what other people heard.

Yesterday, we went to a coffee shop, and Elliott told the cashier, "I have a backpack." She said, "You do? What kind?" He said, "Scooby Dooby Doo." She said, "Cool."

This may not sound like an amazing exchange, but my heart nearly exploded. He had a conversation, with a stranger and SHE UNDERSTOOD HIM. On top of that, he looked into her eyes when he talked to her. Holy shit. This was HUGE.

Not only that, but before we left school, he asked a boy what his name was and then he and the boy went off to play for a few minutes. Another mundane (HUGE for him) event!

On the way home, he told me what he had for lunch and a song they sang at school, another big deal.

It was just one thing after another, back to back, and I realize it sounds so small when I describe it, but it was amazing for us. I turned to Elliott in the back seat on the way home from the coffee shop and said, "I'm so proud of you." He just looked at me and asked me to play his Sesame Street CD again. I know he doesn't understand what I mean. But I also know that he will someday, soon.

insomnia, anxiety, hope

I know it's been awhile. Stop looking at me like that. I already feel guilty. So I awoke at 3:17 a.m. this morning and my mind began assualting me with "what ifs" and "to dos" and I could not go back to sleep until I had created an Excel spreadsheet the possibilities. I am not exaggerating.

Here's what's going on. Elliott is in an okay preschool with pretty good teachers and curriculum. He is happy and learning. However, his program is called an inclusion program, which means he should be with typically developing kids. The reason Elliott would benefit from this is 1) it's the law and 2) he does very well with watching and adopting more typical social skills from neurotypical kids. He does it with Ben all of the time. He went to a regular preschool for two years and did it there as well. At the same time, he needs the supports in place to help facilitate his goals, and this is why he needs to be in a special education program. An inclusion program offers both the support and the learning from typical peers. Redlands said they were giving him that but they didn't--all of the kids in his class have some sort of deficit, and many have more serious conditions. This is not an inclusion program.

So a friend and advocate told me that I can possibly establish district residency where I work and after a lot of back and forth with that district, on Monday, I have an observation at one of the most cutting edge special education inclusion preschools in the state. If we decide to move Elliott there, my schedule and his schedule will go all to hell. I will have to find someone to help me transport him to and from a school 35 miles away from our home. I'll have little time to work around that schedule. I'll need to devise Excel spreadsheets and worry late into the night. He'll likely have to attend a few meetings with me at work. He'll have to adjust to a new school with new kids and a new teacher. But it will be worth it. That kid is on the cusp of getting to where he needs to go; he just needs a great program to get him there. I hope this one is it.

happiness

I sat in the back seat of my car with Elliott this morning as he finished his waffle before school. Although he eats a lot, sometimes he gets silly and nibbles on his food like a tiny mouse, taking long stretches of time to eat a small amount of food. Since I consume entire meals in a matter of minutes, and generally do everything as quickly as I can, it kind of drives me crazy to watch someone eat so slowly. Plus, I didn't want him to miss circle time. So we sat together in the back and he smiled at me because he thought it was funny that I was sitting in the back seat rather than the front like usual. I rubbed his head and he asked me to see "wormy," his imaginary friend (basically, our index fingers). Yesterday and last Friday, he had to get a bunch of blood taken for routine medical exams related to his autism and his low weight. It seems like he is always obligated to do something: speech therapy (at two different locations), occupational therapy, behavioral therapy, assessments, doctor's appointments (psychological, medical, biomedical). He also has school and swim class. He's part of a research study up in Sacramento which requires even more testing. He has to get more blood, urine, and stool taken and examined than any other kid I know. I want him to get better, but I don't want him to feel like he can't simply enjoy his life. Sometimes, it's a tough thing to balance. When he was first diagnosed with autism, when things were really bad, when he was still just barely a toddler, I used to ask him, "Elliott, are you going to be okay?" before I put him down to bed. I never got an an answer of course. He's just begun to learn how to the names of emotions and how to recognize and imitate them. Sitting in the back seat with him, I asked, "Elliott, are you happy?" He said yes, and he smiled to demonstrate that he was happy. I asked, "Are you sad." "No," he replied, shoving a big bite of waffle (finally!) into his mouth. So, for now, I guess I'll do my best and take his word for it.

the (minor) surgery

Last night, I had just about had it. Last time Elliott's ear tube surgery and hearing exam was scheduled, he got so worked up that they thought he had a cold and they canceled the surgery, after weeks of waiting. I spent several more weeks waiting and placing weekly calls to annoy the nurses into fitting him in. During my weekly call last week, I got lucky and they told me there had just been a cancellation. Could I take off work and bring him in on Tuesday? Yes, I could. At the pre-op on Monday, they poked and prodded Elliott and made me walk him all over the hospital. He was understandably annoyed with the TWO HOUR wait, and this old man named Uncle Floyd started complaining about him, and about my mothering skills. I was this close to giving Uncle Floyd something to complain about, but his niece was kind and deflated the situation. I am so sick of people making me feel like there is something wrong with my kids. It makes me angrier than anything makes me. Angry enough to punch an old man with a walker in his veiny, red nose. Instead, I cried a little and went to work and taught badly because my mind was elsewhere.

And then last night, Elliott got a small fever. And a little cough. And then Ryan told me this kid at day care had a 104 degree fever and his mom didn't take him home. I was crushed. The stakes are so much higher with Elliott because he is meeting with all of his specialists this month and if we didn't get his hearing squared away, the appointments would be useless. I've been under so much stress writing letters and calling people and carting the kids around to all of their specialists' appointments. I felt like I had worked so hard and it had all come down to this: failure.

So I went to bed defeated but I set my alarm for 5:15 and I prayed Elliott would wake up with out the fever. And he did! No food or drink was allowed for the little man until 9am, so he was extremely agitated. Yet, I couldn't let him cry because they might cancel the surgery again. I felt as though I had this (cute) time bomb on my hands for hours, and each time the nurse took his blood pressure or affixed a bracelet to his wrist or looked at him too long, I winced in anticipation of his screams and head banging. There was a little of that, but I had a bunch of toys and I let him do stuff I normally wouldn't just so he would keep it together. Want to play with the doctor's computer? Sure. Want to grab the blinds on the window? You got it. Play with the I.V. holder thing? Absolutely. Finally, just when I thought he couldn't take it anymore, they took him from me and carried him down the hall. He didn't cry when they did that, which shocked me, and as the door closed on him, he did a little fake sneeze, and I felt sad and nervous for the next 45 minutes.

The surgery went fine, and his hearing is perfect. Which is a relief and leads us to the next step in finding out what is wrong with him. When I went the get him, two nurses were struggling with his red and screaming body. He had been trying to rip the I.V. out of his arm and they were attempting to tape it down. They told me his screaming was a reaction to the medication, but as it kept worsening, it became clear (as I knew all along) that this had more to do with his personality. "We have a reputation," I told the nurses. They wanted to wait until he calmed down and drank some juice before they discharged us. I told them this would never happen. Eventually, they believed me and let us go. As soon as we were in the hallway, he stopped crying, and he drank his whole juice on the way home.

So I don't feel like a failure anymore, even though I'm still anxious to find out more about what is going on with Elliott. The Inland Regional Center is finally working with me rather than against me to get more services for Elliott, and I'm hoping my letter writing, phone calling campaign will subside pretty soon. My hope is that this will all be a funny story some day...

reality sets in...

The shadow of autism has haunted our family since Benjamin was very young, courtesy of his speech delay, obsession with routine, and unusual attachment to the letters of the alphabet. I worried about Ben, yes, but no matter what they said, I never really believed it was autism. Because a large percentage of his relatives have obsessive compulsive disorder, I recognized and understood his behavior and I somehow always knew he would be okay. And he is. His speech is almost caught up and he is already learning to read. He has tons of friends at school and he expresses emotions readily (sometimes too readily).

And then we had Elliott. And he too had a speech delay. But even before that, as an infant, he never really wanted to cuddle with me. When he cried, my touch was less a comfort than an irritant. He literally never really hugged me until he was nearly 1 and a half years old. Okay. He wasn't cuddly. But then he wouldn't talk. He acted as though he were deaf and he made poor eye contact. He doesn't get the relationships between things or understand that language is a communication tool. He started to learn words, many of them actually, and then he stopped. Now, pretty much all he does is pretend to shush someone or pretend to sneeze or pretend to cough, empty immitations. Sometimes he waves good bye. He used to blow kisses, but rarely does that anymore. He tantrums uncontrollably and nothing I can do makes him feel better. That's the worst part, the part that makes me feel the most helpless. Mothers are supposed to comfort their children, and I am useless.

I have spent the past several months in denial. He shows affection sometimes. He makes eye contact sometimes. Maybe it's all just one big hearing problem.

Yesterday the woman than works on him with his language development told me she is fairly sure he has autism. I trust her the most because she's the specialist who spends the most time with him. When SHE finally said what she's been hinting at for the past few months, I felt something break inside of me. And now I know. I just know that if he doesn't have full-blown autism, he has some other spectrum disorder. And so I tried not to cry in front of her. And I have been trying to keep it together all yesterday and all of today. At work, I am telling a student why his thesis needs restructuring and autism autism autism is running through my brain. Suddenly the shadow is a real thing, a monster lurking. Suddenly, I believe in it.

He sees a neurologist and a developmental specialist in the next two weeks. His audiology appointment (the 7th one?) is next month.

The worst part about all of this is that autism is this amorphous, confusing diagnosis and based on all of my research it seems like no one really has it figured out, though there are lots of treatments you can try. I am a person who wants to fix things, to control them. And this is way beyond me.

I want Elliott to be happy and healthy. I want him to have everything. I want to get inside of his brain and make everything connect the way that it should. He is this sweet and beautiful boy and he doesn't deserve this and I feel as though I have done something wrong, that this is partly my fault.